One Day at a Time

As this disease progresses, I find myself reluctant to have Kevin take that next step.  A week ago last Wednesday (Jan 4), a new hospice nurse visited the house.  After evaluating Kevin, she was sure he was on the decline and needed a hospital bed.  What? The recliner was working fine.  How would we transfer him from a bed to a wheel chair? "You won't," she calmly answered. "But you don't have to decide right now." With a few tears, we gave the okay.

Ironically, Kailey and I had just talked about taking the Christmas tree down over the weekend. Change of plans! If we were getting a bed in our living room, there was no room for a tree.  Once the hospice nurse left, we jumped into action. My trusty helper, Kailey, ran to the attic to fetch the boxes and we disassembled and boxed it up in no time.  With the boxes still piled in the living room, there was a knock at the door.  The bed was here!  Seriously??  She had told us they don't move furniture and they don't help move patients.  Eek! We weren't ready.

Sleeping as I write this

The delivery guy set the bed up in the middle of the living room.  Once he left, we tackled the job of moving the heavy, solid oak desk from the living room to the other room.  We couldn't lift it, so we had to find and use the furniture mover stored in the garage.  The two of us managed to transfer Kevin from his recliner to the wheel chair.  Picture Kevin (wrapped up in a blanket because he was cold) sitting in his wheel chair in the door way while two crazy women pushed and pulled furniture, vacuumed 100-year old cobwebs found under furniture and maneuvered his bed into place.  There was no shortage of entertainment that afternoon and to quote Kailey, "No one got hurt!"  Kevin was snug in his new bed. An afternoon that started with tears ended up to be quite fun.

This same hospice nurse encouraged us to use the medications in the care package to keep Kevin comfortable.  For a family that isn't big on taking pills, this was another step.  How do we know he really needs them?  What does he need? How much?  This doesn't fit into the "Buck up" mentality we live by.

I've surmised, since this nurse visited, that her theories weren't quite accurate.  She was making observations without ever having seen Kevin before so she could not accurately see progression (or decline).  Kevin is not on his deathbed.  His breathing is good. His coloring is fine.  He is still eating. Is he deteriorating? Certainly.  Most likely, that is due to his tumor growth.  He has no movement or strength on his left side at all.  His right side is weaker and more inaccurate when it comes to movement.  He cannot sit up without the assistance of the bed (or a whole lot of muscle power).  We no longer make any attempt to have him leave his bed.

Our biggest hurdle right now is sleep.  For some reason, Kevin cannot settle himself down to sleep at night.  Although his body is fairly immobile, he uses his head and right hand to do his own version of "thrashing".  I sleep on the couch next to his bed so I can answer to his needs. Unfortunately, that has become a challenge I cannot meet. Kevin gets wild and crazy ideas in his head that I cannot change no matter how hard I try.

One night, he was desperately trying to line up the flaps on his blankets. What does that mean? I turn on the lights.  He is wide awake.  I show him the blankets...no flaps. Then he wants help with the lid on the silo. I give him drugs for anxiety and restlessness. The weirdness continues.  At one point, I crawled into bed beside him and started asking him questions about his childhood thinking it would take his mind off the current dilemma occupying his brain.  That lead to a 30 minute discussion on setting an alarm.  "I set the alarm.  It's okay. Just relax." "Did you set the alarm? We need the alarm set?" "Yes, dear. I set the alarm." And on and on and on.

All of these scenarios are mixed with moans from gas pains, requests for drinks of water, and complaints of an ache or pain that is there one minute and gone the next.

Another night Kevin hollered at me, "Kathy!" "What?!" "Come help me open this shed door," as he is pulling on the side railing of his bed.  "You are in your bed. It's okay. Go to sleep." A few minutes later he is plucking at his bedding and stating, "There is something wrong with the upholstery in this vehicle.  Help me get out of this car."  Still later he claims he is setting up the kitchen.  He needs buckets for the utensils.  I crawl in bed with him again and get the bright idea to ask for "a break." In our former life, if we were toiling away at a task, we would agree to "take a break" for a certain amount of time.  I would lounge on the couch and he in his recliner.  Since Kevin was hell-bent on setting up this kitchen, I decided we needed a break.  Every time his head started to toss or his right hand went up in the air, I would say, "Can we just have a little break? I could really use a break."  Eventually, about 4 am, it worked, he was sleeping. Success!

The following night, after yet another series of crazy adventures, I thought I would try my tactic again.  "I need a favor. Can we just have a little break?" Kevin retorts, "Break? I'm just here for a color test!" Sorry for the language...but what the hell??? Although these stories are humorous to me now, I don't find them funny at the time.  I stink as a nurse and my patience leaves everything to be desired even when I have a full night's sleep.  After multiple nights, with snatches of sleep here and there, I am pleading, "Just go to sleep!"  Thankfully, he remembers none of any of this in the morning.

Are we trying drugs?  Yes.  At times it was a guessing game. Other times I had a concrete plan from the hospice nurses of what to give at what times.  In all cases, haloperidol, lorazepam, morphine and sleeping pills have not worked. After talking with others, the lorazepam seems to have a history of causing hallucinations, so we no longer have that drug as an option.

Do I have help? Yes.  Others, especially Kailey, have offered to take my overnight shift.  My issue is that we don't have a set plan yet that works.  If I knew that Kevin gets this drug at this time and this one at another time, I could feel more comfortable letting someone step in.  As of now, it is still trial and error with the never ending hope that tonight's method will work.

Our biggest joy each day is our visitors.  People continue to take time away from their busy lives to schedule a visit with us.  For me, that would be a tough thing to do...what will I say? what will I do? what will I see? But so many of you are such good people that you don't let your fears cause hesitation and you reach out to us.  Thank you.

Kevin is ready to go. He doesn't want to live like this.  I am ready...that's a lie.  I continue to live day by day, afraid to look into the future.  It's just too scary without Kevin. But I know this is not the life he wants to lead and I am not cut out to patiently provide the kind of care he needs. God will decide the right time.

Throughout all of this, Kevin still retains his sense of humor.  He may not remember much or struggle to find a word, but then he will throw out a line that will have all of us chuckling.


Tonight I am thankful for:

• Medications that give me hope that tonight could be the night he sleeps through the night (or at least a couple of hours).
• Making Fettuccini Alfredo tonight with Kailey and following it with a glass of wine.
• Short term memories so there are no hard feeling for my impatience.
• Not having to go to work the next day after a night with no sleep. Not everyone has that luxury.
• My mammoth blanket (a huge brown furry blanket) that I curl up in to search for sleep, whether it be on the couch or Kevin's bed or the dining room floor.
• That my car has not had to leave the garage during these days of rain, ice and snow.
• Supportive family that we know will be there when we need them.
• Visits that include updates and stories and laughter.

"Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own."

Matthew 6:34

"Praise be to the Lord, to God our Savior,

who daily bears our burdens."

Psalm 68:19